To The Special Needs Mother: This was you all along

I’m writing about my son Parker, who has Down syndrome and changed my life. I’m writing about why you’ll only ever see what you look for. And finally, I’m writing to define what I mean when I say so often that my life changed.

The only thing that changed was me.

So, of course Parker changed my life. That’s a bona fide understatement. He came charging in that day in the delivery room, turned me on my head and flipped out my pockets. He laid bare every one of my emotions, forcing me to carefully evaluate and analyse myself. He didn’t do any of this personally – he was an infant. And this is where people misunderstand the rainbows and unicorns of legend.

Parker’s only contribution to my state of mind was simply being born a little different. The day I birthed a child with Down syndrome, I was plucked from my role as a typical mother and firmly set in a new type of life.

The period of adjustment was a raw, vulnerable experience. And it was nothing to do with the child in front of me.

My child was doing the same things all the other newborns were doing – sleeping, feeding, smiling, burping. And every moment as I parented him through his early months, MY brain was reaching in the future – evaluating, searching, looking for the meaning, the rhyme and the light at the end of the tunnel to prove to me my life would return to some semblance of normal.

I eventually found what I was looking for – I planned out a new kind of future for my child. I planned a future where he would be in mainstream school, he would be accepted, and loved, and live a life as close to typical and standard as I could manage.

Of course, time brings perspective. Goals may start as dreams, and turn into plans – but it doesn’t mean factors won’t prevail. Mainstream school may not be the best thing for my son. Other challenges will come up too, forcing my hand and suddenly those goals won’t be as important as first thought.

My son’s life can’t be ‘on track’ for anything right now beyond Maslow’s hierarchy, as I aim to keep my childrens’ needs met. They simply need the basics ticked off – happiness, fulfilling experiences, striving for good health as best I can while keeping their home life secure, and being a strong anchor to return to when feeling vulnerable. Parker will find his feet in the world, just as his sister will and just as I did before them.

Coming to the realisation that I don’t need to know where he’ll go to high school, or how much therapy he’ll need in ten years, was rewarding in itself. It doesn’t mean I’ll stop dreaming and creating joy in our lives. It doesn’t mean I’ll stop working hard on giving him the best opportunities possible. It means I’ve accepted the outcomes don’t matter right now.

And until they do matter, we’ll keep just having fun adventures, Parker and I. On his Facebook page this year, we live streamed the first moment he asked for more tickles. He learned the name of the workmen on his daily walk to school. He accidentally killed an unhatched chick within its shell with his particularly exuberant brand of love and spent that evening loving on an avocado to prove to me he has ‘gentle hands’. He went to hospital for dehydration during a food strike and he smugly pulled out an NG tube at 2am, then proudly woke me to show me his accomplishment. He learned to put pants on and is still learning how to choose clothing colours that aren’t radiant in their flowery or hypercolour glory.

He will never stop having adventures, branded with a little bit extra of… well, everything.

But my role in his world has been redefined from those early days when all I wanted was my life ‘back on track’ and staying in a zone where I felt comfortable and safe. I wanted to know my future, what it would look like. My role has changed significantly, I now realise. Because back then, I never knew where I was going in the first place. I just knew I wanted what I felt everyone else had – or rather, I wanted to emulate their highlights reel.

The truth is, I don’t know where my life is taking me. I will never know. The loss of our beautiful Nicky forced my hand in accepting my child’s genetic diagnosis would never have stayed the biggest thing in my world – because life changes in an instant. We loved Nicholas for the joy we watched him bring, and because he was a soul who deserved and needed to be loved, never simply because he was ‘in the community’. Nicholas was a light, a pure personality and his mother reflected his light perfectly through a pen and a camera. I am eternally grateful for the memories she helped him leave behind.

So I’ll keep encouraging my son to be himself, find his voice, find his feet and smooth the way for his personality to shine. I’ll look for the good in people, as I watch Annie consistently do so well. I practice this daily with my son, and his instant acceptance and love teaches me to look harder to find the purest qualities in others, while moderating my relationships with solid boundaries. I learn this to teach the skill to him in turn.

Giving into this glorious, messy, wild, loving, busy, sleepless, joyful ride of humanity right NOW means remembering the options waiting around the corner never need to be set in stone. In fact, they can’t be. They will remain limitless if I choose them to be in this moment. And that in itself brings its own quiet peace.

We need to always remember humanity is inherently good. People are good. Intent is everything. Don’t ignore the bad, speak up loudly – but know it’s not the norm. Look for the good in the world. Show them when you hurt, when you don’t understand and when they’ve hurt you or yours in turn. Let them see you as a person, and what you’re about. How you can love passionately, and hard, and stay strong on what’s important to you. Show the world you have flaws, and you get scared, and remind them it’s normal to worry about your future and that of your children – while knowing that your worry and fear will never define you.

Nothing has changed in the world that hasn’t generally already happened to someone before us. Our chapter is new – but the story is much the same. So reach out, and find those stories to help you as you write your own.

You can trust the world. It’s okay to slow down, plan for the now, and let the rest work itself out. It’s okay to take a deep breath. Trust what’s coming will always march closer, regardless of your plans. The future inevitably will become the now. And this, too, shall pass.

You won’t change. You’ll just grow into yourself. Because this was you all along.